The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Thursday, November 10, 2011

Safety net

I have a lot to do: this is a fact of my every waking moment (and my sleeping ones too, though I'm less aware of it then). However, there are some things that deserve a rant no matter how busy one is, and this is one of them. Stop reading now if you don't want to "get involved."

As a parent--as a mother--of a child with Down Syndrome, it behooves me to point out that a new prenatal test is being released soon that will make testing an unborn child for Trisomy 21 safer, more reliable and available earlier. This is not good news, obviously, especially for those of us who love one of "these children" and all those who might have had the chance to discover the adventure for themselves.

I'm not going to point fingers at anyone who gets prenatal testing, that's not my intention. It just grieves me that it's so commonplace now that we have become immune to what it is we are doing when we let a doctor take a sample of blood and look for "abnormalities." I do, however, want to point out one very obvious fact that I think gets left out of most discussions, at least among plebes like me, and that is the issue of who profits from the test.

When a mother gets this "MaterniT21" test, as it's being called (for one full article on the subject read here), no matter what the diagnosis is, who profits? Full marks if you said the company that produced the test, i.e. Sequenom.

We may think that it's the woman, or the couple, or their family who "profit", but the fact is that Sequenom want you to take their test, they want your money and they don't give a damn what the result is for you. This is evidenced by the fact that they don't put one red cent into developing education or training materials for those who perform or take this test. There is no moral dilemma for them, this is not a child's life in limbo, or a family's journey, it is simply a few billion dollars they stand to make if people buy the jargon of "safety" and get the test.

Here is another fact, just as unappealing to many people: there is no such thing as safety. You can have all the tests in the world and your child is still unknown until he or she is born. There is no test to see what their grades will be, if they will be predisposed to stealing (or worse). If they will have friends or finish school or end up on the streets. You can never know, you just have to live with and love the people you've been given, and you get to find out along the way how blessed you have been.

Sorry for the rant, but I have to speak out. If not for myself, then for one of "those children"-- and two others who learn, in part by my example, what it means to walk beside him every day. I know Adam, and all my children, not from tests but by asking the one who made them to help me know them.

It is not easy, but it is surprisingly very safe.

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